Sorry I have not jumped in before to show support; Paula, I am sure there are loads of people who have been watching in awe! And hoping that all the work done by so many PD advocates, many of whose voices we no longer hear, is coming to fruition........

I've been following this discussion with great interest, both as a PWP and as someone who was involved in a (failed) attempt at getting something going here in the UK that was patient led. The reasons for that failure were many, but one of the biggest was that the efforts made were not recognised by the sole org that represents the charity end of UK PD interests. So over here we have the opposite to you guys in the States - we have too few and you have too many!

What strikes me most about the discussion is that if you applied the ideas that have been batted around to something non-medical, but with the same grass roots intention you would come up with something that is very similar to the on-line lobbying groups - one of the best known is avaaz - that also work on the basis of being effectively a list, which is then used to lobby for different issues, the list member then being free to add their weight to any issue that they feel strongly enough about. As a model for patient led advocacy and as a means to put pressure where it is effective it would seem to me that data generated by USE of the list could then help create sublists that would be dynamic and effective because they would tap into the things that individual members of the group would identify with and wish to engage in. This would also create a means to identify the issues that are most important to PWP's, and a way of presenting this particular type of data (in terms of advocacy) to the existing orgs as an authentic 'voice' of PWPs internationally. I have to say that I do NOT think that there should be any separation in terms of the US and the rest of the world! While a huge amount of the work and effort will and does come from the US, the way forward is of neccessity internet based, and therefore has no borders. There are already people in many countries who in some way have been active in advocacy, certainly of Joop in Holland, but there are also people in other european countries; australia, canada and india spring to mind too.

Sorry I think I have got a bit enthusiastic, and if my rather long sentences are hard to decipher, my apologies....... I am excited by the possibilities, for medical knowlege,for advocacy, and for a collective voice for us all. You Tube video/s should not cost much, the technology is there, and it is not all about spending huge amounts of money, but much more about having a great idea!

I love the idea of decision making by consensus but feel that any new venture starts of with a core group of 'ideas' people who trigger the momenturm. This is what is unfolding right now..... Could there be a statement of intent and a proposal, or something similar to a mission statement that condenses the core aims, all the detail can then be worked on from there. It is easier to get consensus on the heart of the matter......... that would be what people would sign up for, and would identify with........

Just doing this, making it happen will give exactly the kind of unified voice that the non patient led orgs could listen to......

Best wishes in all endeavours, and thanks for this discussion....
Lindy

would love to be of use, if at all possible........